Sophia3

Interesting...I could never wear a watch for very long...always tried cheap ones but they would quit running after a few months...this was YEARS ago...I bet one wouldn't last that long today.

Morgan..I am confused...they said you were getting in Monday but you passed out at your appt TODAY. Did you mean Friday? Anyway, I am GLAD YOU SAW YOUR DOC and that you fainted in front of him. Dang, Ihope you get more answers. Oh, and don't forget to bring up the mitochondrial stuff! Tie another knot and hang on. Sorry about the ribs....I hear it only hurts when you breath, laugh, cough.....etc???????!!!!!!!!!!!!!

good luck with your journey to Vandy! I hope you get some details to help you treat your individual case. AND good luck with the long trip. Are you driving or flying? While I hear follow up is disappointing from MANY research centers, at least getting details from your tests should help to understand your body. Ask for the details BEFORE YOU LEAVE. Keep us posted when you feel up to it.

Morgan Doesn't matter if the doctor feels bad. You are the one that needs to LIVE IN YOUR BODY. Tell him you NEED THE CHAIR. If you choose not to use it daily, at least it's there to HELP YOU get out and around the house. You DESERVE the chair. I still think it was crummy of him to BLOW YOU OFF when he KNOWS you wanted to discuss the chair weeks ago. Be your own advocate. Take somebody with you if it helps. Make notes. Tell him you are tired of looking at the ceiling and risking concussions. Would he rather ignore your fainting risks? Is he going to be RESPONSIBLE for your black outs/grey outs? Being open to 'prescribe' the chair would take some liability off of him...I would tell him that too! Good luck, kiddo. Stand your ground

this is extraordinarily common in POTS...according to many docs. Pretty much FLAT on my back during this time...even more than usual. Getting dressed is sometimes out of the question OI wise (stay in bedclothes) sometimes I have to stay in bed...other times I can recline in a chair but sitting up even partially wears me out greatly on these days. The older I am getting the WORSE THIS IS which is scarey. I am 49. All I can do to drink and get up to go to the bathroom...STINKS but birth control made me worse. Just have to not go to the store or do anything on these days. All the tricks (fluids, salt and meds) usually do ZERO for me on these bad days.

TaylorToMom Your HORRIBLE experience and the horses rear end ER doc leaves me speechless!????????? So sorry for what you went through.

Morgan Is this the article you were talking about? http://www.spaceref.com:16080/news/viewpr.html?pid=8161 I posted a similar one a few months ago but the link no longer works. This has Dr. R in it. I am, therefore, I is. Be here now. Sometimes not knowing is the best place to be. (not that I agree with THIS platitude or whatever it's called! LOL)

Thanks Michelle! I hope the Daytona is over by then. Or else I need to remember to tape Mystery Diagnosis. VROOM! VROOM.

Congrats Nina! I was looking at some photos of Croatia and it looks beautiful.

12string I realize I have HORRIBLE brain fog due to lack of blood flow and am sick due to the 'time of month' female thing, but I could not make a lick of sense out of what you posted?! Also, in your post to Nina, I hardly think a person with a doctorate can answer questions on a message board. This site is quite busy and many folks may stumble upon this place to read information. But to expect somebody to just be 'on standby' to answer questions would be great, but unrealistic imo!! If that is not what you meant then just forget about that statment. I am having such difficulty comprehending maybe I shouldn't even be posting today. LOL. It's great to have the few message boards online that there are to ask ANS questions. But most of us can't get a return phone call from our real docs office in a timely manner...let alone some doctor volunteering for a message board. Not tryiing to sound snotty but I think this place has plenty of VALUABLE folks to respond. or places to direct us to..... Sometimes those of us WITH this illness know more about it than the doctors who are book smart. As much as we would like a cure, it is far off in the future or not happening for those of us disabled for 16 years! I like to be hopeful but at this point am just realistic and cope with a chronic illness. While it's certainly ok to ponder or extrapolate, most of this conversation is over my head! Yikes. Just my two cents. Peace

I am not sure about the specifics of what YOU are looking for but the study of H-P-A Axis and CFS (Hypothalamic-Pituitary-Adrenal Axis as cause of Chronic fatigue syndrome) problems have been documented since the early 1990's. I used to read the CFIDS Chronicle and this was often discussed. Many groups of CFS also have dsyautonomia which would tie into your question. That area of the brain also controls circadium rhythms. The Hypothalamus is indeed responsible for homeostasis of the body as are the other glands in regulating the body. This stuff is way over MY head to get into a discussion about and my foggy brain has long since forgotten the details of said subject. I read about this many times and I know you can find a BOATLOAD of info about this online but not sure what YOU are hunting for. That said, are you referring to a certain ARTICLE? What was the search that led you do the Suprachiasmatic Nucleus? Maybe one of the medically oriented folks here can direct you and the rest of us if we think it is pertinent to individual cases. For the most part there are many 'theories' and depending on the doctor and researcher, different answers/arguments in days gone by. Kind of like dysautonomia schools of different research. Dr. Grubb told me it was like trying to convert folks to a different religion. Some ANS docs have THEIR theory and are often not open to new things. I am open to new things if there is a CONCRETE CONNECTION and FIX to my case. So that's my two cents worth. Perhaps a more medical savvy, multi-syllabled person can help.

wow..that link posted varies WILDLY on the half life of drugs but then, it TRULY does vary from individual to individual. I was reading in a paper today from Canada (my sister was in Vancouver last week and brought some home) that many Asians do NOT benefit from nitroglycerian for heart disease. The pill does not relieve the crushing symptoms in 30-50% of East Asian population, due to a genetic defect they carry. It also mentioned a heart drug target towards blacks because it helped them more than caucasions. The title of the article was "your drug prescription is in your genes." It was very INTERESTING to read this. While those of us with ANS problems know meds vary wildly in our systems and from patient to patient, it truly makes you wonder how much our backgrounds and genetic makeup affects any drug, herb or food we eat. That we are born predisposed to many things or reactions beyond our control. I know when I used to take "sleeping pills" they did weird things to my muscles and kept me AWAKE. Even Chloryl Hydrate (sp") and it was been around for well over 100 years. I have never been fond of the recipe book for pill dispensing anyway. Good luck tapering off of your benzo. I hope you start feeling better. http://www.theglobeandmail.com/servlet/sto...eandHealth/home Here's the link to that article I read. I don't mean to hijack this thread but thought it may interest somebody.

Julie Sorry you are in such a painful place...Just because you are on something for depression and it's not working, doesn't mean there are not lots of other options. I hope some meds and counseling can help you with the feeling of being so overwhelmed. Good luck.

Nina Ok, I know personal days require notice but wasn't sure about sick days. My sarcasm doesn't transfer well to email. I hope you get relief soon.

Nina Hope you get some relief from your headache. Giving a sick day notice 5 days in advance is no easy feat either!!?? Feel better.

Mary I am so sorry for the fearful place you are in. I can NOT imagine being in MRI when power went off. I too avoid elevators at most costs. If you need MRI just do like Morgan and you want-_MAJOR SEDATION!!! I am sending thoughts and prayers to you. Take a deep breath, and tie a knot in the rope as you take the next swing of tests to see what's going on. Take care of youself in the meantime and keep us posted Sophia

Morgan, Here is a cake for the occassion!!

I just now read in many cultures, sitting down is part of the ceremony for the bride and groom. Also, for Morocco weddings, the bride to be is 'lavished with attendants' to make her beautiful for the wedding and paint intricate Henna tattoos on her. and put lots of makeup on her The best part of that? The woman is NOT ALLOWED TO DO ANY HOUSE WORK until the henna tattoos fade! LOL. Also if one is in a wheelchair, it's often suggested the other half of the couple sit in a nice chair...like a nice wicker chair or something. So you have lots of options if you are tired. I once worked with a girl who saw the most romantic couple on a dance floor years ago. A man was in a wheelchair and a woman on his lap, as he slowly spun his chair around to a slow dance as the woman hugged his neck. How sweet! Just to show, physical limitations do not have to interfere with celebrations. AND you can always call Rent-a-Lazy-boy Recliner if you are really tired!! LOL. Then again, put a guy in a recliner and he's more likely to ask for the remote control than a ring! Ha...j/k! I can't wait to hear the details and your husbands' reactions. It's true romance if you feel like this after 25 years you know.

Thanks for the replies. The smell has dissapated greatly so far. You used to smell it before you opened the door to the small room it is in!!! Now, you open the door and still smell it though not as strongly. After 48 hrs. It was such a PUNGENT OVERWHELMING ODOR I thought, 'what the heck did I buy?' So I hope after another 4 or 5 days, it may be bed-nose friendly. I am not only sensitive to smells but have the BEST NOSE of anybody I know. It's a curse sometimes. I smell things long before others....and with ears, I hear things long before others but that's another topic!!

Morgan, That is TOO SWEET!! What a great idea. 25 years. A true milestone. I am glad you have a sweetie. Hey, if you can't stand, maybe you could sit down while doing it??....in a NASCAR! Ha, just kidding...Dave had his dream last week. ;-) But WHY couldn't you both be sitting down? PLAN on standing up but hey, if you are having a bad day, just have two chairs close together where you can sit and hold hands and look at each other!! Just an idea. i wouldn't let O.I. get in the way of what is obviously, everlasting love. Take some photos!

Tracy Sorry you thought you were getting better only to have a setback. And your low potassium, I hope they keep an eye on that to try and find a cause. I, too hope you can find a counselor to speak with to help with coping skills. I found a good one to help me when I felt overwhelmed about things. I hope you find some relief soon. Sophia

I posted a very similar article a couple months ago and it has since disappeared....the link no longer works. THAT article was a little different but this one has lots of the same words/sentences in it! :eek: It also mentions how Dr. R, 20 years ago, might have blamed OI on anxiety or deconditioning. http://www.spaceref.com:16080/news/viewpr.html?pid=8161

Jan It is a memory foam. I lay down on my sisters bed and i could not smell it through the mattress pad and sheets. I did bend over to smell the foam and it had a hint of odor but she had had hers a few weeks at that point. So the memory foam smell does go away eventually. I just finally moved some furniture of mine into the house where I have been living with a generous friend. My back could use the foam tonight!! But the smell will have to go....I know it will but Shazaam. Gotta have patience. I don't like the smell of rental cars either and some are more gross than others. I tell them not to use deoderizer but they must use disgusting soaps. So, I am really worried about the foam being "hot" in the summer...but hope the mattress cover helps. Also wondering if my sheets will fit!! If they do not, I still have a set of king sheets here to use and I can just tuck in the extra amount on one side of the bed I don't use. Gosh, I thought of so many details like the outgassing but just now wondered about the heat issue in summer. Yes, those organic beds can be VERY PRICE. It's pitiful they make laws to SPRAY CHEMICALS on bedding to "protect us". Well, I don't smoke nor do I smoke in bed. But we all know most fires folks die from smoke inhalation and toxix fumes. So unless you are rich, we can't afford to by 'chemical free' bedding. I wish they would let you sign a paper releasing liability stuff and say leave OFF the chemical retardant. In MY case Jan this foam topper smells just like the regular mattress I got years ago...heck, it must be more like 12 years ago. But the 'smell reminder' came right back. They do spray the junk on this foam and it may either air out sooner or take longer. Thanks for the feedback.

Ok, I got this thing that is supposed to help with sleep and fibro/aches. Does anybody here have one. Not the mattress but "foam topper." I was warned about the odor but WHEWY!! It burns my throat and it isn't the foam, it's the flame retardant chemicals. A few years ago I got a new mattress straight from the factory and it had the same smell. That was 10 years ago and I AM SO SENSITIVE to smells. I MUST have been a dog in another life. We have it airing out in a small room off the garage and I hope the door to the outside a few times a day but it is in the 20's here!! My sister put hers on after 12 hours of ougassing. It will take at least a week before I can tolerate SLEEPING ON THIS THING. 1. Does anybody have worsening of symptoms by chemical smells? Yes, correct? 2. If you have one of these, how long did you let it outgass? Why do they make things for 'healthier sleep' smell so disgusting. It makes no sense. They need to outlaw the chemicals on bedding. 3. Also, now that I have it, my fear is I will BURN UP in the summer since it 'retains heat.' Anybody had one of these live in home where you have to be thrifty on AC bills. Utitility bills are skyrocketing around here and I can't imagine the hot humid nights on this thing. (Now I think of that aspect) Anybody with experience with this thing? I am so prone to waking up and getting tachy from heat when sleeping anyway. Sorry for all the questions. On a good note, I got the good thickness of 3 inch and 4lb weight and got the King sized. I will trim it down to make a pillow for head and between knees when knees are achy. It was the same size for twin or king so oversizing was a no brainer for my Queen bed.

dizzygirl Could your doctor have perhaps said you are developing 'clinical signs' of diabetes w/o blood tests to prove it? Otherwise, I am confused as well. He didn't mention Diabetes Insipidus did he? This has NOTHING to do with blood sugar but many of us have symptoms of it w/o having it and DDAVP helps. Here is an article on Diabetes Insipidus. I hope you can clarify what your doctor means. Does diabetes run in your family? Take care http://familydoctor.org/048.xml